Post Regenexx – 8 / 9 Months Check In!

Post Regenexx – 8 / 9 Months Check In!

MarchAprilMayJuneJulyAugustSeptember, October, November, December . . . This year is FLYING BY. Yesterday was a bit of an emotional day for me because December 17th, 2012 was when I first received my AVN diagnosis. There were a few Christmas since then where I felt very hopeless, scared and fearful for the future – but not anymore!!! NOT AFTER THIS YEAR!!!!!

Opening Night of the Rockets Christmas Spectacular November 2015
Opening Night of the Rockets Christmas Spectacular November 2015

 

I’ve continued to progress wonderfully. For the first time in 4 years, I can go to yoga and do pretty much everything. Yesterday I was in class and, during our vinyasa flow, we completed a series of balancing poses. Prior to my stem cell procedure, I would have been nervous to attempt them. I’d do the poses on my right side and then would awkwardly stand there, trying to look like I was doing something else, while everybody did the left side. Once I had my Regenexx procedure, I’d attempt to do my left side lightly. I’d put a little more balance on it, hold it for a few seconds and then come out of the pose. But now, I don’t even think twice about what side is which! And oddly enough, to which I don’t understand at all, I actually have better balance on my left leg (the AVN side) than I do with my right leg (my “good” leg). I’m not complaining though!!!!!

Downtown Pittsburgh Light Up Night 2015
Enjoying Light Up Night 2015 Sans Crutches!!!!!

 

In November, I went up to New York City for a National Psoriasis Foundation and Leo Pharmaceuticals blogger summit. My parents ended up going with me and we took a few days to do a bunch of sightseeing. It was a lot of fun, but I can’t lie I was a little nervous because I knew we’d be doing a ton of walking. I took my 1 crutch because I figured it would be good to have some support while I was walking. Well, long story short, the trip was awesome, I walked a ton and my crutch proved to be more annoying than helpful. I felt like I was basically dragging my crutch along, more than it was being supportive. By the end of the day my ankles and lower legs were SUPER swollen, but my knee NEVER HURT. NOT EVEN ONCE. I think the swelling was because 1) my body was like WTF Julie, you haven’t walked this much since like Winter of 2012 and 2) my psoriatic arthritis probably had something to do with it.

Enjoying My FIRST Wedding since June 2012 Sans Crutches!
Enjoying My FIRST Wedding since June 2012 Sans Crutches!

 

Back when I first was diagnosed with AVN, Pittsburgh started to have a little European Christmas Market downtown in Market Square. I had really wanted to go see it, but barely had enough energy to go up a flight of stairs so I didn’t make it down there. The next Christmas, 2013, I was doing a bit better, but still didn’t have the stamina to go down and see it. Last Christmas, I probably could have crutched my way around it, but I didn’t end up going. BUT THIS YEAR, not only did I get to go down and see if, but I WALKED AROUND CRUTCHLESS!!!!

Amazing Director Doug Orchard Shooting Me And My Regenexx Story On Top of Mt Washington in Pittsburgh, PA December 2015
Amazing Director Doug Orchard Shooting Me And My Regenexx Story On Top of Mt Washington in Pittsburgh, PA December 2015

 

June 2012 one of my best friends got married. It was the first wedding I attended where I couldn’t dance and really enjoy myself. I still had fun, but I wanted to be out on the dance floor. As the years went on, every wedding I’d go to I’d promise myself “Ok, THIS is the last wedding you won’t be able to dance at.” But it always seemed there was another wedding I’d go to and I couldn’t dance…. BUT, this November one of my high school girlfriend got married and guess what. I TOTALLY DANCED AT HER WEDDING!!!!!!!!!!!!!!!! The best part? The next day my knee wasn’t even sore at all! My hips and feet were sore, but not my knee!

 

I’m really excited to announce that Regenexx has filmed a short video on me and my recovery. The beginning of December they sent an awesome director, Doug Orchard, out to film me about my knee. It was SO SO SOOOOO much fun. Doug took some amazing shots so I honestly cannot wait to see it. I’m anxiously awaiting it’s release and will absolutely be posting it once it’s finished. So stay tuned!

https://www.instagram.com/p/_R3L1LFFOc/?taken-by=itsjustabaddaynotlife

As the months go by, I get stronger and stronger. I’ve actually started to become accustomed to pain free days (SAY WHAT?!) and am truly working to get my life back. Last year I had my crutches all decked out in Christmas lights (click the picture above, or this link, to be taken to my instagram page to learn more about those!) , but this year I’m happy to report that it’s the first Christmas since 2012 that I’ll happily be WALKING and ROCKING around my Christmas tree 😉

Want to know more or catch up on past posts? Check out the links below.

Wishing You A Pain Free Day!

Julie Cerrone | Spoonie, Autoimmune Warrior, Certified Holistic Health Coach, DoTerra Wellness Advocate, 200 RYT Trainee, Reiki 1, Nutrition Geek, ePatient Advocate, IT Consultant, Pittsburgh Based Practitioner Living the Chronic Life

 

 

 

 

10 Ways I Got Ready For My Stem Cell Regenexx Procedure for AVN/ON of my Femur. Avascular Necrosis / Osteonecrosis | It's Just A Bad Day | AVN Knee, Psoriatic Arthritis, Complex Regional Pain Syndrome

 

Looking for more Regenexx related posts?

Procedure:

Want to know how I found the procedure? There’s a post for that 😉

Day 1: Did you miss my previous post about my prolotherapy injections? Catch up here!

Day 2 & 3: Want to know more about when I had my blood drawn for my injections? Read this one!

Day 4 – 7: Interested in how the procedure went? Click here!

Day 8: Want to read about the last day of the whole process and my journey home? This is the post for you!

Monthly Recovery Posts:

Month 1: 5 tips from my post 1 month Regenexx recovery right here 😉

Month 2: In my 2 month follow up, I talk about 3 noticeable differences I’d identified!

Month 3: 3 month follow up and 3 things I’m grateful for.

Month 4: 4 months post Regenexx I’ve been caught saying ‘this is the first time in a long time’ A LOT!

Month 5: 10 NEW things I did 5 months post Regenexx!!

Month 6 & 7: MRI update on how things are regenerating and how I’m doing without my biologic Humira

Month 8 & 9: Spent 3 Christmases on crutches and it feels DAMN GOOD to be crutchless this year!

Month 10 & 11: Back to living a normal life & celebrating things I haven’t done in YEARS!

One Year: One year celebration and update on getting a platelets treatment for a different problem!

One Year + 6 Months: I traveled to the NIH to speak at an FDA hearing regarding regulations and guidelines on stem cells. Watch my testimony!

Two Years: Celebrating 2 years of a mobile and pain-free life!

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  • Darlene Smyda Dormanen

    Hi, Julie! Just sitting in my recliner on my 3rd day of recuperation from my own Regenexx stem cell therapy in my hip. I had mine done out in California where I now live (I’m fortunate to live within 45 min of the Oceanside office), but I’m a native Pittsburgher! (still trying to get over the Steelers’ playoff loss today! Sniff. Sniff.) I started to google about the infrared machine they mentioned to find it online and came across your posts about the procedure. It was really encouraging to read your month-by-month recovery and progress and I’m so excited for the possibilities. I was told by 2 orthopedists that the pain from my hip joint degeneration (from a car accident 2 1/2 yrs ago, I believe) could only be relieved by an eventual total hip replacement! I asked my husband how it was possible to put a man on the moon and regrow fingertips, but the only fix for a degenerated joint was a metal ball and socket?! I stumbled upon stem cell therapy by accident as I suppose most orthopedic surgeons don’t want to lose out on a potential hip replacement patient and don’t present it as an option. In any case, I wanted to let you know that I am so happy for the amazing results you’ve experienced with your stem cell therapy and the encouragement it’s given me that mine will yield great results as well! May this new year be your best year ever.

    • Darlene, I’m so happy to read this! I apologize for taking a few days to get back to you. I’d love to connect with you to keep up with your recovery. If it’s ok, since your email address is with your name from the comment, I’m going to send you an email!

    • Derek

      Hey Darlene,

      I’m recently diagnosed with AVN in my right hip (stage II) and they have noticed very slight possible onsent in my left hip. I see you had the Regenexx therapy in your hip and I’d really be interested in hearing about your experience and how it’s coming along.

      My orthopedic doctor’s plan for me was the avoid “high impact” activities like running, jumping, basketball, etc. and then to hope my femural head revascularizes. As you’d imagine the “wait and pray” approach is not appealing to me. I’ve been researching as much as I can and come across some alternatives like the anti-coagulant treatment from Dr. Glueck as well as a Minimally Invasive Treatment Using Stem Cells that the Mayo Clinic does (a type of core decompression that uses stem cells harvested from your iliac crest).

      I am glad I came across this blog and that everyone has been willing to share experiences.

      • So I wasn’t familiar with this procedure by the Mayo Clinic so I looked it up (Is this what you’re referring to:http://www.mayoclinic.org/medical-professionals/clinical-updates/endocrinology/stem-cells-studied-as-minimally-invasive-treatment-for-avascular-necrosis-of-the-femoral-head) and honestly it sounds so much like the Regenexx procedure. That’s basically what they did for me, except they didn’t do the core decompression. All they did was drill into the bone and inject the stem cells. There was no need to do the core decompression.

        • Derek

          I first came across a YouTube video posted by Mayo Clinic: https://www.youtube.com/watch?v=aw7crjzok20

          I believe it’s under the Regenerative Medicine department, found here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/musculoskeletal-regeneration

          • Thank you for sending this! I have a friend who’s BIG on stem cells – not just in AVN but across the board. I just reached out to her to see if she knows anything about this procedure!

          • Derek

            I look forward to hearing any feedback she provides. I know the YouTube video above from Mayo was posted June 2013, so I know I would be interested to see how results from these procedures are shaping up. There’s another video posted Dec. 2012 about the procedure too.

            I haven’t yet been able to find any published results or updated studies but would certainly be interested to see some.

          • Derek

            So I got to thinking today after reading some things on the internet. Since AVN is related to lack/loss of blood flow, why don’t they angiogram or scans with contrast that show the blood flow to see if/where the stoppage is occurring? Is it a matter of the arteries and veins in and around the femoral head are too small to see anyway?

          • That’s actually a really great question. I honestly don’t know. I know that I had a bone scan and that’s how they found mine – along with an MRI. But you’re right – if it’s a blood flow problem, why don’t they do that? SUCH A GREAT QUESTION!!!!!!!

          • Derek

            Well after much Google searching I didn’t really find much in regard to AVN and angiograms. If you have contacts in the health professional world, maybe pose the question to them as I don’t really have anyone I can run it by.

          • Derek

            Just wanted to check in – I’m a little over 4 weeks post op from having the surgery at Mayo. When I arrived April 25th and they did xrays, they indicated my right femoral head had started collapse but it was small (1.5-2mm). Normally they didn’t do the procedure after stage 2, but Dr. Sierra said he had noticed once, that the femoral head lifted in another case. So they had a new procedure for very specific cases where in addition to decompression + stem cells they also injected a demineralized bone matrix graft to elevate the collapsed area of my femoral head. So far they had only done like 7 or 8 of these.

            This additional step makes the procedure more painful and the recovery longer (6 weeks no weight bearing instead of 2 weeks limited weight bearing as tolerated). They gave me about a 60% chance of success, so right now I’m playing the waiting game until my 6 week follow up for xrays and then subsequent 12 week follow up for CT scan and xrays.

        • Derek

          Thank you for sending on, I am also interested to see what the differences are and how they compare.

        • Derek

          So here’s some updated information I have from Mayo as I have been in contact with them about this procedure. According to their YouTube video it is outpatient and approximately 45 minutes.

          According to Dr. RJ Sierra they have done about 200 hips with this decompression and it’s approximately 80% successful around 5 years of follow up.

          I am awaiting clarification to see if this is completely accurate as their estimate department didn’t seem too confident in all these numbers but the hip decompression is just under $28k per hip and then another approximately $5k per hip for the stem cell injections. I believe for most insurance, the decompression is covered but the stem cell procedures are not. But even so, with my insurance I’d still be looking at $16k to have both hips done.

          So all in all it’s pretty successful but it’s also quite expensive. I’m also waiting on feedback to see what the recovery period looks like.

      • Darlene Smyda Dormanen

        Hi, Derek. Just noticed your email, so sorry for the delay in replying. I have degenerative joint disease (basically an arthritic hip joint) I believe is a result of a car accident about 3 years ago. My condition is a little different since I don’t have AVN like you and Julie. Two orthopedic surgeons basically told me that my only option when the pain got too bad was to get a total hip replacement. I couldn’t believe that in the 21st century the best they could do for a degenerated hip joint was to replace it with a metal ball and socket, so I was thrilled when I found out about that stem cell therapy was being used on arthritic joints. I didn’t even know AVN existed until I read Julie’s blog! I got the same Regenexx stem cell procedure that Julie did, but at one of the clinics in the San Diego area. It also involves taking stem cells from the hip bone and platelet rich plasma injected into the hip joint and bursa. I had it done just 4 weeks ago and don’t have much to report other than a slight improvement (however, usually improvement isn’t expected before 3 months, so that’s actually a good thing!) The doc said it was a positive thing to even see a slight improvement with my ability to put weight on it more quickly when I stand up (since my labrum is shredded, the femur bone seems to come out of the socket when I sit down), the ease/less pain with which I can lift my leg to put on socks or pants and get into the car or when I bend the joint to sit down. I’m glad to see a slight improvement already but expect it to be more apparent as time goes on. Julie, who had the procedure for AVN would be a wealth of info for you, I’m sure, and I see she’s already replied to you! 🙂 My procedure cost $6200 for the hip at the clinic in California that I live near, though it’d be little cheaper if you have a PPO which I don’t have. I’d be curious to know what the Mayo Clinic charges if the procedure is the same. I agree with you that a wait and pray approach is not always the best and I think it would be best to save yourself some years of pain and loss of mobility if you can treat it early. Believe me, if I’d known a few years back when I first had the pain where it was leading me (hip replacement) and that I could get stem cell therapy, I’d have done it back then to preserve the cartilage I did have. All the best to you, Derek! Feel free to email me with more questions. I’m kind of new in the process so I don’t have much more to report at the moment, but willing to tell you anything I can! 🙂

        • Derek

          Thank you for the reply and certainly no need to apologize for any delay. I appreciate your willingness to share your story with me. I am happy to hear you’re improving and wish you continued improvement in your journey. I too would be interested to see what they Mayo Clinic’s procedure costs, although I am sure it’s a bit more since they are still doing a small decompression of the hip and injecting the stem cells in the void.

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